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Celiac. Figured Out.


sapphire-sky

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sapphire-sky Newbie

Hi everyone,

here's my story. 2 years ago I started to have problems with uncontrolable weight gain. I was always a very skinny girl before(always underweight). And then all of a sudden I started gaining weight fast...38 pounds in 6 months! I also had problems with severe bloating(which I thought was caused by salt and it occured before the weight issues), severe heartburn, mouth ulcers and depression( which I thought was my own fault), I didn't really want anything in life, I had no energy... And being 18 that didn't seem normal. It's not normal at any age.

I went to a genecologist since I have never had regular periods, I got tested 4 a thousand hormones and she found progesterone deficency and ovarian cysts due to lack of ovulation. I told all the docs I've visited about the mouth ulcers and etc...they just told me to take vitamins. And I did, all the time. I ate healthy, I had a diet based on whole grains, I eliminated meat, but nothing changed. I still felt half dead, I still had severe bloating though I limited my salt intake to a minimum. I was still always hungry, I never felt satisfied and I didn't lose any weight... Until lately everything changed when I decided to go on a low carb diet. I eliminated grains, bread etc...ate only veggies, meat, fish, poltry for 2 weeks. And you know what happened? I literally started to deflate...Like a baloon, I forgot about heartburn, the ulcers went away and...for the first time in a long time I didn't feel constant hunger! And then I decided that maybe a whole grain breakfast 2 times a week wouldn't hurt. And guess what? It did!! I couldn't understand it, I ate whole grain pasta for breakfast one day and oatmeal the next and it caused an instant reaction. Bloating, hunger, an overall uncomfortable feeling. The second day was the worst, after eating the oatmeal I started overeating and drinking water, but it seemed like my kidneys and intestines just shut down. My body was just retaing everything... I knew that the only thing I changed in my diet were the grains. Not in my wildest dreams could I imagine that a person can have such an intolerance! Grains are supposed to be healthy, but then why is this happening? I decided to look it up online and I found that I'm not alone. I found the truth when NONE of the doctors could.

I don't live in the US, and I don't know if we have gluten free products. Please give me some helpful tips. How do I make sure I'm not consuming it? How long does it take for all the symptoms to go away?


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ravenwoodglass Mentor

How long it takes to feel better depends on the person and the amount of damage they have and how many body systems have been effected. You may get a lot of relief very quickly but most of us have ups and downs for a while. It is easiest to be gluten free and you will heal quickest by eating as little processed food as possible. Eat meat and fruits, veggies, nuts, beans, rice etc. Many of us find we can not tolerate dairy very well at first as the villi that are damaged in your small intestine also create the enzyme needed to digest dairy. You can add it back in after a month or two and see if you react. You also want to be careful of gluten ingredients in your shampoos, toiletries and makeup. Check out the Products section or do a quick search to see if the stuff you use is something that others have already checked. Also watch out for meds over the counter and script. Have your pharmacist check them or if they have a phone number on the package call the company yourself.

You have found a great site for support and info. Ask any query you may need to and do as much reading as you can. If you tell us what country you are in there may be members there that can help with available gluten-free items. Welcome and I hope you get relief soon.

rsm Newbie

Grains are not always good for you! Read labels, start with meats and veggies, fruit, rice and slowly add things in to see if you can tolerate them. I had to give up dairy as well. It may take months or years to be completely better but it is nice to be on the road to recovery. To know what the problem is. I had doctors telling me to eat lots of wheat fiber, I always felt worse..... Many, many foods are naturally gluten free. There is still a great variety of foods available to us. Welcome to the gluten free world!

Vykt0r Rookie

Quite honestly, this is the story of my life...mostly. Back in the U.S., though.

Kaycee Collaborator

Story of my life too, but not in the US.

I knew my problems had to be related to something, something that I ate everyday. I did not make the connection until I tried dieting, eating naturally less bread and what do you know, I figured it out. It was the gluten getting me.

Cathy

loco-ladi Contributor

My "road to recovery" started a few years ago on a trip "back home" and was invited by my cousin and my grammie to eat lunch, I tried to decline giving my ever famous "eating is like playing russian roulette" speech when my cousin said..... I bet if you eat lunch with us you wont get sick.......

dang but she was right and she hadn't even been diagnosed yet! (she is now thanks to me, lol) The next day she gave me "the list" and darned if for the next few days not eating anything on it, not once did I get sick! had other issues but no sickness and a few other problems decreased as well......

upon arriving home I asked my doctor about it....... he said "I told you its acid reflux nothing more, just take this little pill and you'll feel alllll better"

and I again refused his little miricle pill, they didnt work before I wasn't going to do it again!

I started searching, and found a nice lady at the hospital in the kitchen........ the rest is history, and the dr still doesn't believe me, well, gotta go make an appointment in the am, will see what happens now....... need some blood work done, think I am having b12 issues and maybe iron? not sure what else.

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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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